My Severe Case - Lichen Sclerosus [LS] With Pictures. I need YOUR help.

Women's health
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If you are reading this sentence, please continue. I need YOUR help.

In this submission, im going to tell you how I think I got it, a short backstory and I will also share my very intimate pictures and so on. 

So I will try to make it all very short and clear as possible. And thank you if you're taking even a minute to read this or if you're giving me some advice. 

To begin with, I am a 22 year old female.  I do not smoke, drink alcohol or had any sex. (If that even matters.)

When I was 14 y/o I got into a really depressing state. Due to trauma, stress which lead to my depression I've had for years now. 

At 15 I got into really bad habits. I stopped with all my hobbies such as martial arts, swimming, singing. I stopped going out from my house, I dropped out from school.  Didnt see the sun for weeks sometimes. Didn't leave my house for months. 

My sleep got affected fast, and all the sudden I could not sleep. I was worried 24/7.

And from that, my anus (the outside) started to itch tremendously. The itch never stopped, but it was worse at night.  

I scratched my bare raw skin, and I could feel my own skin layer fall off. And from that, I noticed pigmentation change. 

The itching grew from anus to vagina/vulva - around and not inside. And from that it grew to my groins. And there I was, for years, trying to substain whatever condition I was in. But I never stopped scratch my skin. I scratched minute by minute, hour by hour. Due to the horrible itch I can not sleep at night. And I can say I havent had a good night sleep since 7 years ago.

I am mad at myself that I stopped care about myself years ago. I am mad at myself, I didn't do anything sooner about it. I was and still am - in a bad psychological state, also emotionally, physically, mentally. This has affected me in every single way and I can't live like a normal human being anymore. 

I can't work, it burns, itches, I can't wear pants, jeans, leggings, or underwear. 

Each day I can slightly touch my for example. my groin - and a skin layer falls off in my own very hands.

I also can't pee normally. I can not hold my pee and I have peed myself several times. I even have to have a potty right next to my bed because when i gotta pee, there's no time to run to bathroom. It sometimes hurts when I pee too.

Besides from my horrible itch, that is mentally draining, some other strange symptoms is:

- White or yellow coated tongue in the morning.

- Awefull breathe no matter how much I brush tongue, teeth, mouth overall.

- White fog in my yellow pee.

- MUCUS/Phlegm stuck in my throat every morning. 

- White pubic hair: Yes you heard it. I've started to grow white pubic hair on vulva. 

  I also have started to grow white hair in the back of my head/neck area.

- I gained 30 kgs within a year from when I was 15-16 y/o.

-Along with that, my anus/vagina oozes out.. how to say it.. a rotten smell? Its super damp, and smells rotten. I've also noticed small scarring on vulva..

I've lived in this horrible draining condition for 7 years without seeking medical help.

And I then decided - it's time for a change.

So, I recently went to the western doctors. They took some blood tests and they said nothing was wrong with my liver or kidney. They were perfectly healthy. I also took urine test, and nothing was wrong with my urine.

The only thing they told me was that my Vitamin - D levels was really low. And he prescribed ' Vitamin D capsules '.  He also did mention I have low blood pressure.

He mentioned that I " might """ had an overactive thyroid. And if it's anything serious he would call me in again to take some other tests. But I never heard back from him.

So I went to another doctor and showed him my little 'situation' down there between my legs. He had no idea what it was, but he just prescribed an cortison cream to just cool it down and he told me that I've to live with it. 

I'm also gonna add,  around anus and vagina area. It is either VERY dry or VERY moist. It feels like im always heating up down there.

I later then, instead of going to hospital - I went to a clinic to visit a woman who practice Traditional Chinese Medecine, and that's what she has been doing for 30 years she said. 

She examined me, took my pulse, looked at my tongue, eyes, and then she took a look at my anus/vulva situation.

My tongue was white/yellow coated. And so was my eyes - yellow. 

She told me I'd a condition called ' Damp Head '  and then she mentioned that I have

Lichen Sclerosus. 

We barely understood each other due to the language barrier, but she seem to know how to cure it. She mentioned: capsules, chinese tea/herbs and accupuncture. 

I asked her, how long does it take to cure? ( Which I realised maybe I shouldnt've asked)

Since I've had this skin conditon for years, it perhaps will take years to cure it..

She set up a package for me: for each month, 4 bottles of chinese medecine capsules, 4 sessions of accupucture, and chinese herbal tea. It was going to cost me: 1200 USD. 

And this she was assuming, I was going to be able to pay, for as long as its going to take to cure it. 

I am now a student, and I certainly can't afford paying 1200 USD each month.

She then gave me another offer. Two bottles of chinese medecine capsules, (will last 2 weeks) That was going to cost 200 USD.

I was amazed how pricy it was. How do people afford it? I then accepted her last offer, but that was it. I never returned to her. I went home, searched on the internet of the medication she gave me and I found the exact same on the internet for 8 dollar per container..

So now Im sitting here, the western doctors don't recognize my condition, nor did they bother to even look deeper into it. They prescribed an cortison cream and that's it. Which made it all more inflammed by the way.

I live in Sweden, and the traditional chinese medecine practitioners are very limited. 

I don't know what to do, who to seek help for.

So, If YOU have any advice, or any experience - please tell me more about it.

Do you have any recommendation for any doctors in Traditional Chinese Medecine?

I am willing to seek medical help abroad. I am going to change my diet completly. And I'm going to put myself first in all cases from now on.

Now to my questions,

- Is it possible to cure Lichen Sclerosus completly?

- Can my skin pigmentation ever go back to it's normal or do I have to live with a red/white anus/vulva for the rest of my life?

If  YOU recommend any herb or ointment to stop the itching - please do.

- Is there any medication/ointment/herbs that can make my pigmentation/skin grow back?

- Should I be taking any supplements?

Please fill me in with suggested diet, supplements, what to avoid, what to do, herbs and ointments that worked for you. And if you do know someone who practice Traditional Chinese / Internal Medecine and you think he/she can help me -  feel free to let me know who the person is.

Now to this sumbission I've attached some pictures of my anus, vulva and groin. 

And yes, I lauged a bit cause it was very hard to take proper photos by yourself.

I deeply apologise if  you got slightly.. traumatized.

Now lets be all nice towards each other, I only came here to seek for help, I am desperately looking for any type of help & advice.

And during my journey, if anything improved or.. less improved. I'll keep ya'll updated.

Best regards

Ninni

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I've to re-upload picture due to size.

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Hi

I'm so sorry you are going through this. There are some wonderful people on this forum who I'm sure will be able to offer lots of advice.

LS can't be cured but it's possible to manage. Have you tried taking some antihistamines at night for the itching? I'm not sure of the brand names but in the UK something like piriton would help. You can take it for calming the itch due to rashes.

Could you speak to your doctor and ask to be referred to a vulva specialist? I think they would be able to help diagnosis or guide you through this.

Sorry I can't be more help xx

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Hi Ninnis,

I'm so sorry you are going thru this. I have had lichen sclerosis for almost 3 years. When I was finally diagnosed I just cried because it had been repeated trips to different doctors trying to find out what was wrong with me. I'll just tell you what I know and what helped me.

You are in the middle of a flare. Lichen never gets cured but you can get to the point where it will be controlled. When you are flaring you get the white patches with itching and pain. When it's controlled the white parts go away.

You can see a dermatologist or gynecologist but I felt better understood and taken care of with the dermatologist. I have been given Betamethasone and Clebestasol. Hopefully they can get you to a point where you can feel it coming on and put the creme on.

So I have made some changes with laundry detergents and bath soaps. All free of fragrance and gentle. When washing your hair make sure to wash away from the body. Do an extra rinse of the vaginal area. Also I very rarely take baths but take showers.

I have heard sugar aggrivates it but I love sugar so I have not given that up 😍

I hope this helps! Hang in there!

It will be better!

Jen ☺

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Hi, which country do you live in because you really need to go to a Vulva Clinic where people are experienced with LS.  In the meantime, it sounds like you may have vaginal and oral thrush as often LS and thrush go hand in hand.  You can buy something called Diflucan, a tablet, over the counter and Nystatin which deals with oral thrush. 

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I am so very sorry you are and have had such a hard time...both mentally and physically.

I GOOGLED, and found there are Specialists in Sweden who might be able to help.....I would do some research on the Drs. And see which one to start with.....

Keep us posted; we care!

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Ninnis , a bit in a rush right now but just to say good for you you found this group... this the first step to feeling better emotionally and physically. You’ll get the best tips here and the best support... first step to treat is to first acknowledge your problem and then get the strength to get out there and get help. Congratulations Ninni you’ve made the biggest step so far. You will have friends here that are going threw the same thing as you so.... you will see how much great tips will bring you to a better place..xx

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Just wanted to add that i really do think that emotional schock or depression state, stress or just deception ( you know? Like ongoing deception of life has something to do with this) at least that’s what i 🤔 think....

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Your not alone Ninnis, it’s perfect that you put the photos. Here you’re with friends. 🤗 don’t worry it’s gonna get better.... 

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Ninni , I’m so sorry to hear your story . I’ve have only now been diagnosed . I’m 60 and most probably had this for 3 years since I came off hrt . There is so much information on this site I’m sure if you read through it all you will find something  to help you . Just a thought but have you discussed hormones with your doctor ? You had it at the time of puberty and that may have something to do with it . Hormones or lack off have been known to kickstart it . I’m too old now for hrt but maybe your doctor could give you some kind of hormone treatment to help you ( maybe contraception pill ) or similar would help . It’s a long shot but worth investigating , I read somewhere on here that a lady went back onto hrt and it cleared it up but came back when she came off . If you could get some relief  until your older would be great ,  good luck with your journey , anything is worth a try until you find which one is right for you !! Oh and everyone raves about emuaid which I am going to try after I’ve tried steroid ointment as the doctors prescribed ,  cbd oil may be another one you could try , that would help with your depression as well . I’m going to try everything one at a time to see what works . 

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Hi Ninnis, Really sorry to hear about your condition.  I do think seeing a doctor is the first step to get some effective medication to start.  There is lots of good advice on alternative solutions to the management of LS. I'm sure in no time you will be looking better and better.  I too went to a traditional Chinese acupuncturist who also gave me herbs to take and promised me he could help.  $1000 later, I'm not any better.  But it was worth trying. Everyone's body is different and not everything suggested will work for you.  We are all experimenting and trying to get to a happier place in management.  Clobestol has really worked for me, but because of the side effects, it is not good to be on it all the time. It has taken away the itch immediately but doesn't help with fusing, which I now have.  Good luck and maybe when you have sought some professional help to start you will be able to destress a bit.  LS is very stressful, but once you find what works with managing it, you will hopefully learn to live with it and deal with it on those bad days and know it will pass.  You have found friends here.  This site has been a lifesaver for me in finding alternative solutions and not feeling alone.  Take care of yourself.

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Dear Ninnis,  HI I"m Nancy, age 72... and I remember clearly that my now 33 year old daughter used to have a lot of depression around puberty. For you it's been extended. The most well known nutrition in support of depression includes the Vitamin B complex and extra Vitamin B-12; also magnesium.. AND vitamin D which your one doctor told you about. 

 As a matter of fact when I realized I had this LS about 7 months ago i started researching online night and day. I finally wrote up what I found out which you might find helpful. I was particularly interested in knowing what the co-factor were to vitamin D3.  Your doctor probably didn't know all the other supplements that complement the D3 (be sure to buy the D3 form).  Please read the link so you know the other supplements to help you.  I was out of the worst of the itching within days of taking 15,000 IU Vitamin D. I wonder what strength D your doctor prescribed? I now take 5,000 a day and base all the other supplements on that dosage. Many of the other supplements are natural antidepressants by the way.

I agree with Guppy that you seem to have more than just LIchen sclerosus affecting your health.  Guppy uses the term thrush, which refers to the type of candida infection in the mouth area.  A yeast infection in the vagina is simply called candida in English - meaning candia OVERgrowth.  Ninnis dearheart, you have a very bad case of candida overgrowth. It can be fixed with over-the-counter medicine (at least it is in the United states) called Monistat.  That will stop the bad odor down below. Talk with your pharmacist let him/her know that you've had it for years without seeing a doctor so they'll know what strength to give you etc. 

Also as you read here you'll realize that you must must must go off of every type of sugar entirely - at least until you no longer have any discharge and odor.  The coated tongue can be from several things, including dairy products that aren't being digested.  So NO SUGAR; NO DAIRY. 

You might have read up here by now that there are quite a few emollients that we all use to soothe the pain of LS.  I recently discovered Aloe Vera gel. Another one is coconut oil, or olive oil. Sometimes we also use baby's diaper rash ointment with Zinc ( I do especially on my anus when it needs it.)

HEre is the link to my article: 

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

Blessings, let us know how it goes for you. 

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Hello Nancy,

and thank you so much for your informative answer. 

It's very frustrating here in Sweden with the medical part. Doctors are 9½ out of 10 not really bothered with the patients condition. Not only does it take months to get an appointment, but the get an answer/result too. They've no interest what so ever and it frustrates me so much.

I sure  have to visit doctors several times more. The hard part is convincing them to let you take blood test and urine test. I do think I have Hormone imbalance. 

But the root to everything, was bad diet, severe depression, got extreme fatigue, stress, trauma, got zero nutrients etc. I'm SURE I not only have acute low vitamin D-levels, but low on all other nutrition levels.

The doctor prescribed me a container of 250 tablets called ' Divisun 800 IU - Vitamin D3 '.

I looked around on the internet, and when someone like me have acute low levels of Vitamin D, I should be taking around 5000 IU ( I think? )  

In my perspective, I dont think taking 5000 IU for a long period of time (in my case) will harm me.Or will it?

I've written down all advice you kindly have given me. And yes, I've stopped with dairy products, gluten. no white processed sugar what so ever. And I rarely eat any red meat to begin with. 

Do you mean you took 15000 IU vitamin D / a day or you took 15000 IU within a few days and the itch disappeared?

I'd no idea about the candida thingy, but it sounds like it. The horrible oozing smell coming from vagina.. ughh. 

How does the Monistat medecine work? I did find it on ONE website here in Sweden, - thank god.

Does the Candida usually disappear after othe treatment, or do I have to repeat it?

I'm gonna look into the link you sent me right now,

And thank you so much for taking your time.

Best regards

Denice

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Hello!

I have not been taking any antihistamines, I didn't even know what it was until you told me about it. 

So clearly I have a lot to learn! I'm definetely gonna look it up.

Im gonna visit the doctor once again, sadly it's hard to get an appointment, and takes even longer for the appointment to happen.. it can take months, and sometimes up to year for you to even get an diagnosis/result..

Thank you for responding!

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Hello there Jen, and thank you for your answer!

So do you mean, the white part actually can disappear? For it to disappear, my skin pigmentation needs to grow back, am I right?

I'm just super worried, and sadly I get even more depressed thinking about " what if my skin pigmentation never grows back, and IF it does, how long will it take ".

Have you lost skin pigmentation? / got the white spots.

I am taking notes of your advice, 

thank you so much for sharing and caring!

best regards 

Ninni

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Hello there!

I live in Sweden. I sadly feel that the doctors, and their knowledge is VERY limited. This condition I have is very rare in Sweden and so it's out of their league..

It sucks over here, you first need to book an appointment - which takes time to even get.

It takes time to even get a referral, and in this country you need referral for everything within the medical district. 

Thank you for your advice, im forsure gonna look it up and buy some - I have nothing to loose by now..

best regards

ninni

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Hi Jane!

Thank you for your message,

The specialist is very limited here in Sweden. It takes time to get the appointment, and for the appointment to even happen you need to go on an another appointment before the actual appointment to get the - referral - which isnt that easy. It's so frustrating, it takes weeks, months, and up to year sometimes. 

To even get to meet the specialist, to take the tests, to get the result and medication. Is hopeless over here. But it's not something I want to give up, I'll still try to get the help I need. 

Im gonna continue look it up a bit deeper smile

Best regards

Ninni